Dealing with Dementia: Help for relatives, caregivers and friends

What is Dementia?

Dementia is the loss of mental abilities and most commonly occurs late in life. Of all persons over age 65, 5-8% are demented. This percentage increases considerably with age. Twenty-five to 50% of people over 85 are affected (Table1).

Prevalence of Dementia (Table 1)

Over Age 65 5-8%

Over Age 75 15-20%

Over Age 85 25-50%

The most common form of dementia, Alzheimer’s disease, accounts for 50-75% of all cases of dementia. Another 20-30% is due to blood vessel disease (“multi-infarct dementia” or “mini-strokes”). The remaining cases result from a variety of less common disorders.

Symptoms and Problems of Dementia

The affected person sometimes recognizes the first signs of dementia. Often family or friends first detect the problem. Typical early symptoms include memory loss, and difficulty performing complex tasks. A person may mislay items, become lost while driving, get confused in the middle of a conversation or lose a prior ability to balance a checkbook. As the condition progresses the deficits become more pronounced and interfere further with daily activities (See Table 2)

Substitution of Approximate Phrases (“Where is the thing for sweeping?” for ‘broom’)

Misidentifying People (Confusing sister with [deceased] mother)

Use of “Empty Phrases” (“You know”, “That thing”)

Difficulty Inhibiting Behavior

Impulsivity, ‘Thoughtless’ Comments, Socially Inappropriate Behaviors

What is the natural course of dementia?

Depending on the cause of dementia, the course may vary. In the case of Alzheimer’s disease, the time between first obvious symptoms, through gradual loss of cognitive abilities, to death ranges from 7 to 10 years. Vascular dementia which usually results from the blockage of small blood vessels in the brain, often has a more erratic course, at times with stepwise exacerbation that parallels the destruction of different parts of the brain.

As the dementia progresses, the person may require increasing care by friends, family members or institutions

In the past, Harry had been a very competent driver. Recently, He has become lost several times while driving, and has had several accidents because he can’t keep track of traffic patterns. Despite this Harry becomes irate when his wife tells him he can’t drive. He demands to use his car, insisting that it is his right to drive it.

After washing her hands, Kathy left the water running in the bathroom and flooded the house. Lately, she has stopped doing any cooking since she finds that she can’t remember how to cook favorite recipes that she has prepared for years. Last week the police called her daughter after Kathy became lost while walking to the neighborhood market.

Unfortunately these problems are often quite frustrating for the afflicted person and alarming to her family. The frustrations can lead to her becoming irritable or demanding, particularly if she doesn’t remember that she has a problem. She may resent being told that she can’t do things she has “always” done.

At times dementia can produce a degree of paranoia, since the affected individual sees those whom she relies on “taking over” her control. She may attribute the disappearance of mislaid items to her care provider stealing her possessions or money.

Despite these changes, people with moderately severe dementia can often engage in many usual activities, particularly if they are not expected to function at a very high level. Readily manageable activities might include attending a backyard barbecue or picnic; helping to repot houseplants, drying the dishes or being taken for a ride in the country.

Many people retain a considerable degree of social skills. For example laughing at a joke (often because everyone else is laughing, not because she understands it). She may carry on a conversation, but respond in stereotyped and vague ways with empty phrases (“My, my! Isn’t that something! You know, it’s just like that.”)

While some rare forms of dementia don’t progress (e.g. dementia resulting from a head injury), the course is usually a relentless decline in functioning. When dementia becomes severe, a person may require much help with personal care, such as toileting, bathing, dressing and feeding. Finally the person becomes totally dependent on his caregivers, loses the use of language and is largely unaware of his bodily functioning or his environment.

Medical Treatments for Dementia

Depending on the cause of the dementia, there are different treatments available. For example if the cause of dementia were severe hypothyroidism, the treatment would be thyroid hormone replacement.

Until the past few years there was little that could be done to alter the course of Alzheimer’s disease. Currently there are a few medications that have been shown to afford (at most) a modest transient benefit. The cholinesterase inhibitors (Aricept® (donepezil) and Cognex® (tacrine) help some individuals. For more information see our article, Turning Back the Clock on Dementia

Caring For a Demented Person

Because of the intensity of care that may be required, it is often difficult for even a loving family to provide all the “around the clock” care that a demented relative may need. If friends or family wish to provide these services it is very important for them to be aware not only of the demented person’s needs, but also of their own needs. It is not uncommon for a spouse or children to feel that they have an impossible choice between being utterly overwhelmed (if they try to provide all the care) or feeling they are betraying their relative (if they send them to a nursing home). This often leads to the care provider becoming exhausted. Because of this it is often helpful to investigate local resources to help the care provider (Table 3).

Local Resources (Table 3)

Respite Care

Publicly or Privately paid temporary care (relieves primary care giver to do errands or just “get away for a while”).

Friends and relatives often provide this even when they are unable or unwilling to share primary care responsibilities.

Adult Day Care

Private programs that provide a safe, structured setting that helps maintain functioning in the affected relative (also respite for the care giver)

Adult Foster Care

Private individuals or non-profit organizations maintain houses and provide care for one or more impaired persons (person must generally be able to perform most self-care functions).

Meals on Wheels

Case Manager and Service Coordinator

In recent years a number of people, often social workers, assist the families of cognitively and/or physically impaired persons with identifying and coordinating needed services

Choosing a Nursing Home

There are frequently exceedingly good reasons why a demented person must move to a nursing home. Usually this happens later in the illness. Generally it because his or her care needs or behaviors exceed the abilities or resources of their family or friends to care for them at home. This may include the need for skilled nursing care (e.g. treatment of infected ulcers) or behavior that requires physical intervention (e.g. agitation or violent conduct, wandering off, falling).

The decision to move a person into a nursing home is often wrenching. The demented person may not wish to go into a nursing home and may become outraged or frightened when the decision is mentioned. Or he may agree with the decision when the reasons are explained to him, only to oppose it later, when he has forgotten the reasons.

There is quite a bit of variation in the quality of care in nursing homes. It is generally if the demented person’s friends or family visit the prospective nursing homes. It is important to ask about the number of staff members per resident, the qualifications of the staff (aids, nurses) and the presence and frequency of services by support personnel (physician, activities therapist/coordinator, podiatrist). See how other residents are being treated (Do they appear clean and groomed? Does the staff seem to be overworked and impatient or pleasant and respectful toward residents). Talk to family members of other residents you see there and inquire about their experiences.

Unfortunately, the cost of living in a nursing home is quite high. In general, the better staffed nursing homes cost more, Another consideration is that once a person uses up their money, they are eligible for Medical Assistance (Medicaid) to pay for their nursing home expenses. This requires that if the person has no spouse, most of their assets must be liquidated and used to pay nursing home expenses before they can receive Medical Assistance. This leaves nothing to reimburse relatives who may have undergone the expense of caring for that person previously. Even if the resident’s spouse is still alive, Medicaid qualification will leave only their home (if they have one) and a limited amount of the commonly owned assets. Naturally this may alter considerably the financial means of the non-institutionalized spouse. Some families consider “sheltering asset” by transferring the demented person’s property to another family member prior to the move to a nursing home. The ethics of circumventing the law must be considered, as well as the legal requirement that this be done at least 3 years before application for Medical Assistance.

In the Nursing Home

Once a demented person has moved to a nursing home, it is not uncommon for her to take several weeks to get used to the new place. She may become more confused in the new setting, and may even become more agitated. Often the care that a resident gets depends on how the staff views them and their family. It helps to visit frequently and to get to know the staff. Making frequent visits (or even phone calls) and asking reasonable, respectful questions show that the family is concerned about the welfare of their resident family member. This generally improves staff treatment of that resident (Some families find that small presents to the staff help motivate them toward this end).

Summary

Dementia is a serious illness that requires much help from a person’s friends, family and society to manage. The eldest segment of our population is now the fastest growing group in the United States. As people live longer, and as the “baby boom” generation ages, dementia is increasingly likely to affect us directly or indirectly at some point in our lives. The purpose of this article is to help provide an introduction to some common aspects of dementia. While research is progressing to understand the causes of dementia and to develop more effective treatments, it remains a significant challenge for us to deal with.

Seniors Internet Resource Center This site lists a large number of links which may be of interest to seniors. Because of its breadth, some of the links may be more interesting than others. www.ageofreason.com

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